Docstoc

Pediatric Epilepsy Resource Hand

Document Sample
Pediatric Epilepsy Resource Hand Powered By Docstoc
					            presents…




 Pediatric Epilepsy
Resource Handbook
             Third Edition




    724 second avenue • new york, ny 10016
   212.871.0245 (phone) • 212.871.1823 (fax)
              www.nyufaces.org
                            DISCLAIMERS:
    Descriptions of organizations in this guide were submitted by the
          organization itself or were taken from their website.
   Therapists were recommended by parents of children with epilepsy.
      Resources in this guide are not necessarily endorsed by the
    NYU Comprehensive Epilepsy Center, faces, or their employees.

This guide is a work in progress. To add a resource for the next edition of
this guide, or to request additional copies, please contact the faces office
                  or use the form at the back of this guide.




   Special thanks Mark Farley for helping us update the third edition
               of the Pediatric Epilepsy Resource Guide.
                                     Table of Contents
National Epilepsy Resources .......................................................................4
New York ......................................................................................................4
New Jersey ...................................................................................................9
Connecticut ................................................................................................10
Summer Camps (Tri-State ) .......................................................................11
Travel Assistance for Families Seeking Medical Treatment .....................14
Clinical Trials .............................................................................................15
Special Education Information ..................................................................15
Special Schools ..........................................................................................16
Education Consultants ...............................................................................19
Finding an Epilepsy Specialist ...................................................................19
Prescription Drug Patient Assistance Programs .........................................20
Therapists Recommended By Parents of Children with Epilepsy .............20
  Applied Behavioral Analysis Therapists .................................................20
  Art Therapists..........................................................................................21
  Occupational Therapists..........................................................................21
  Physical Therapists .................................................................................22
  Speech Therapists ...................................................................................23
Other Resources .........................................................................................25
  Daycare Centers ......................................................................................25
  Dentists ...................................................................................................25
  Disability Resources ...............................................................................26
  Catalogues for Special Needs Equipment ...............................................26
  Financial Planning ..................................................................................27
  Make-A-Wish Foundation ......................................................................27
  Medical Identification Bracelets .............................................................28
  Miscellaneous Tips from Parents ............................................................28
  Nursing Organizations ............................................................................29
  Protective Head Gear ..............................................................................29
  Psychologists and Neuropsychologists ...................................................30
  Psychotherapists......................................................................................30
  Seizure Alert Dogs ..................................................................................30
  Sign Language for Babies, Toddlers, and Children ................................31
  The Son-Rise Program ............................................................................31
Recommend Resources for the 2006 Edition.............................................33
                                                                                                               3
                  National Epilepsy Resources
American Epilepsy Society
342 North Main Street
West Hartford, CT 06117
Phone (860) 586-7505
Email info@aesnet.org
www.aesnet.org
Epilepsy Foundation
4351 Garden City Drive
Landover, MD 20785
Phone (410) 828-7700 or (800) 332-1000
www.epilepsyfoundation.org
A national organization that serves people affected by seizures through research,
education, advocacy and services provided at over 60 affiliates nation-wide.
www.Epilepsy.com
Epilepsy.com is an online resource provided by The Epilepsy Project. Their
mission is to inform and empower two groups of patients and their families:
those facing newly diagnosed epilepsy, and those struggling with epilepsy
that has resisted the usual treatments.
Exceptional Parent
65 East Route 4
River Edge, NJ 07661
Phone (800) EPARENT
www.exceptionalparent.com
Continuing 34 award-winning years of providing information, support, ideas,
encouragement and outreach for parents and families of children with disabilities,
and the professionals who work with them.


                                 New York
Chrissy and Friends, Inc.
930 Willow Brook Road
Staten Island, NY 10312
Phone (718) 987-0940
Fax (718) 987-8194
Contact: Roseanne DeRenzo
Email info@chrissyandfriends.org
www.chrissyandfriends.org
4
Chrissy and Friends offers free tutoring and an after-school recreation program
for children and teens. A parent support group meets at the same time as
the recreation program. Teen/adult bowling meets one night a month. Both
children and adult groups go on trips. The mission of Chrissy and Friends
is to offer support, recreation, education and, most importantly, a place to
socialize and have fun for those living with epilepsy.
Epilepsy Coalition of New York State, Inc. (ECNYS)
120 Washington Avenue
Albany, NY 12210
Phone (518) 434-4360
Fax (518) 434-4542
www.epilepsyny.org
The ECNYS was organized to promote the awareness of epilepsy and its
consequences to public and private sectors in New York State and to improve
the epilepsy service system throughout New York.
Epilepsy Foundation of Long Island, Inc. (EFLI)
506 Stewart Avenue
Garden City, NY 11530
Phone (516) 739-7733
www.efli.org
EFLI provides education, counseling, and residential care to Long Island
residents with epilepsy and related conditions. Services include: individual,
family, and group counseling; vocational counseling; neurological assessment
and diagnostic center; psychiatric consultations and psychological evaluations;
relationship counseling; parent, sibling and spouse discussion groups; liaison
and referral assistance to community agencies and local hospitals; Day
Treatment and Day Habilitation; and stress reduction techniques. The Seizure
Smart Program, Kids on the Block, and other advocacy programs strive to
educate schools, students, and the community at large about epilepsy.
Epilepsy Foundation of New York City (EFNYC)
305 Seventh Avenue, Suite 1202
New York, NY 10001
Phone (212) 633-2930
Fax (212) 633-2991
Email main@epilepsynyc.org
www.efnyc.org
EFNYC helps individuals and families affected by epilepsy achieve their
highest level of physical, social, and emotional well being. We offer a variety
of programs and services including counseling, education seminars on seizures
                                                                              5
and first aid, special fund raising events and the Adventurers’ Club. The
Adventurers’ Club is a recreational program for children with epilepsy and
their families. It allows kids to live beyond their limits and try new activities
while socializing with other kids with epilepsy. Previous adventures have
included indoor-rock climbing, trips to museums and zoos, and an African
dance and drumming workshop.
Epilepsy Foundation of Northeastern New York, Inc.
3 Washington Square
Albany, NY 12205
Phone (518) 456-7501 or (800) 894-3223
Fax (518) 452-1282
www.epilepsyfoundation.org/efneny
The Epilepsy Foundation of Northeastern New York, Inc, an independent
affiliate of the national Epilepsy Foundation, is a non-profit organization
whose mission is to provide education and advocacy services for people of
all ages affected by epilepsy/seizure disorders and their loved ones. For more
than 20 years, our information and support services have helped thousands of
New Yorkers of all ages with epilepsy and other neurological impairments feel
more comfortable about themselves and the way others see them. Our wide
variety of programs, which are tailored to children, adults and their families,
include school education programs, support groups, counseling, service
coordination, and professional in-service training. Programs are available
to members and non-members of the Foundation. We serve residents in 19
counties including: Albany, Clinton, Columbia, Essex, Franklin, Fulton, Greene,
Hamilton, Herkimer, Jefferson, Lewis, Montgomery, Rensselaer, Saratoga,
Schenectady, Schoharie, Saint Lawrence, Warren and Washington.
Epilepsy Foundation of Rochester-Syracuse-Binghamton
Rochester Office
1650 South Avenue, Suite 300
Rochester, NY 14620
Phone (800) 728-7930
Fax (585) 442-6305
Email info@epilepsy-uny.org
www.epilepsy-uny.org




6
Syracuse Office
800 South Wilbur Avenue
Syracuse, NY 13204
Phone (315) 473-6974 or (877) 214-2715
Fax (315) 473-6996
www.epilepsy-uny.org
Binghamton Office
3 Otseningo Street, 2nd Floor
Binghamton, NY 13903
Phone (607) 722-6822
Fax (607) 722-5646
www.epilepsy-uny.org
The Epilepsy Foundation of Rochester-Syracuse-Binghamton helps individuals
and families of all cultures affected by epilepsy and related neurological
impairments understand, manage, and cope with their disorders by providing
education, advocacy and services. Education includes public education for
schools, civic groups and corporations and is designed to teach the public
how to identify and respond to seizures. Some of our other services include:
Residential Services, Family Support Services, Counseling and Support
Services, Case Management Services, Employment Programs, and Camp Eagr,
a residential summer camp for boys and girls, ages 8 to 15, with epilepsy,
regardless of seizure control.
Epilepsy Society of Southern New York, Inc. (ESSNY)
One Blue Plaza, Suite 340, Box 1745
Pearl River, NY 10965
Phone (845) 627-0627
Fax (845) 627-0629
www.essny.com
ESSNY provides comprehensive services to individuals with epilepsy and
other developmental disabilities such as mental retardation, cerebral palsy,
autism, and traumatic brain injury in Westchester, Putnam, Rockland, Dutchess,
Ulster, Sullivan and Orange counties. Our Service Coordination Department
offers Medicaid Service Coordination, Home and Community Based Waiver
services, Traumatic Brain Injury Waiver services and Non-Medicaid Service
Coordination through our Family Support Program. Integrated Supported
and Competitive Employment programs include job coaching and follow
along services. Residential Habilitation services are provided in the home.
Complete Education services are also provided.


                                                                             7
The Epilepsy Institute
257 Park Avenue South, 4th Floor
New York, NY 10010
Phone (212) 677-8550
Fax (212) 677-5825
Email contact@epilepsyinstitute.org
www.epilepsyinstitute.org
Since 1967, New York City residents with epilepsy and their families have
benefited from the comprehensive social and educational services offered by
The Epilepsy Institute. Its five metropolitan office sites are collectively staffed
by licensed professionals from the medical, social work, vocational counseling,
and psychological professions. Quality services include New York City’s
only specialized supported employment, state certified counseling clinic and
day habilitation programs exclusively serving persons with epilepsy. Other
programs include service coordination, information and referral services,
educational services, stress management, summer camp, and a weekend
socialization program. All programs are free or low cost, and no one has
ever been turned away based on inability to pay.
Finding A Cure for Epilepsy & Seizures (faces)
NYU Comprehensive Epilepsy Center/NYU Tuberous Sclerosis Center
724 Second Avenue
New York, NY 10016
Phone (212) 871-0245
Fax (212) 871-1823
www.nyufaces.org
Faces promotes research into neuroprosthesis, magnetic stimulation, Biofeedback,
and new surgical procedures. Faces is also a member of the Partnership for
Pediatric Epilepsy Research and supports the Epilepsy Phenome/Genome
Project. Other programs include free educational conferences, social events
for children and teens, summer camp scholarships, support groups for parents,
two charity apartments for parents of children undergoing epilepsy treatment,
a respite care program, a social group for young professionals, and community
education for police officers, teachers and more. Faces supports the NYU
Tuberous Sclerosis Center.
Parents Against Childhood Epilepsy, Inc. (PACE)
7 East 85th Street, Suite A3
New York, NY 10028
Phone (212) 665-PACE
Fax (212) 327-3075
Email pacenyemail@aol.org
8
www.paceusa.org
Formed in 1996 by a group of parents in response to their experiences in
caring for the physical, social, educational, developmental and emotional
needs of their children who suffer from seizures. PACE funding supports
medical research into epilepsy and seizure disorders and provides resources
and information to support families with similar needs. 85 cents of every dollar
PACE raises goes directly to research or support. To join PACE’s email-based
information resource for parents, send an email to epilepsytalk@aol.com.
Resources for Children with Special Needs
116 East 16th Street, 5th Floor
New York, NY 10003
Phone (212) 677-4650
Fax (212) 254-4070
Email info@resourcesnyc.org
www.resourcesnyc.org
Resources for Children with Special Needs is a comprehensive, independent,
not-for profit information, referral, advocacy, training and support center for
New York City parents and professionals looking for all types of programs and
services for children from birth to 21 with learning, developmental, emotional,
or physical disabilities. Resources is designated by the US Department of
Education as one of a national network of more than 100 parent training
and information centers.


                               New Jersey
Epilepsy Foundation of New Jersey (EFNJ)
429 River View Plaza
Trenton, NJ 08611
Phone (609) 392-4900
Fax (609) 392-5621
Email efnj@efnj.com
www.efnj.com
EFNJ, an affiliate of the national Epilepsy Foundation, is a statewide, non-
profit charitable agency dedicated to the welfare of the over 125,000 New
Jersey residents with epilepsy and their families. EFNJ’s purpose is to
provide services and support to enable people with epilepsy to realize their
full potential and to optimize their participation in society. Since 1970, EFNJ
has provided a wide variety of programs and services at no charge to anyone
with epilepsy and/or developmental disabilities, their families and interested
relatives, neighbors, friends, and community members.
                                                                               9
Family Support Center of New Jersey
2516 Highway 35 North
Manasquan, NJ 08736
Phone (732) 528-8080
Fax (732) 528-4744
Email fsnj@familysupport.com
www.familysupportnj.com
The Family Support Center is a clearinghouse of up-to-date information on
national, state, and local family support programs, services and disabilities.
The Center offers a “One-Stop Shopping” approach to individuals seeking
information on disabilities and services by providing them with easy access
to a comprehensive array of services.


                              Connecticut
Epilepsy Foundation of Connecticut (EFCT)
386 Main Street
Middletown, CT 06457
Phone (800) 899-3745
Fax (860) 346-1928
www.epilepsyct.net
EFCT, an independent affiliate of the national Epilepsy Foundation, is dedicated
to helping people with epilepsy and their families understand, manage, and
cope successfully with the condition, to further public understanding, reduce
stigma, and increase acceptance of people with epilepsy. This is accomplished
through programs and services including: Public and Professional Information
and Education, a Parent and Family Telephone Network, Support Groups,
and a Summer Camp for Children and Teens with Epilepsy. Our services
are provided at no cost to people with epilepsy, their families and the public
throughout Connecticut.
The Special Education Resource Center (SERC)
25 Industrial Park Road
Middletown, CT 06457
Phone (860) 632-1485
Email info@ctserc.org
www.ctserc.org
This is the essential first step for a parent of a child in special education to
become an informed advocate. The center is affiliated with the Connecticut
Department of Education. Parents should call and request the Resource

10
Package for Parents of Children with Special Needs. This package is free
and includes the Connecticut Special Education statutes and commentary
on them plus other materials. Parents may also join the SERC. Membership
is free and benefits include receiving a newsletter with information about
educational seminars and materials available in their library.
Connecticut Parent Advocacy Center (CPAC)
338 Main Street
Niantic, CT 06357
Phone (800) 445-CPAC
www.cpacinc.org
CPAC informs parents about their children’s rights under the special education
laws in Connecticut. Parent advisors answer questions and provide assistance
and information by phone for free.
Westport Special Education Parent Teachers Association (SEPTA)
RESPECT Program
Wesport Townhall
110 Myrtle Avenue
Wesport, CT 06880
Phone (203) 256-1834
Fax (203) 256-9205
Email westportsepta@aol.com
http://myschoolonline.com/site/0,1876,11228-169527-12-13867,00.html
Recreation, sports and social programs for children with special needs (ages
3.5 to 18 years) offering soccer, tennis, roller-blading, ice skating, dance, art,
basketball, swimming, and softball. Activities are non-competitive and based
on skill building. SEPTA also provides an on-line list service for brothers
and sisters who have siblings with special needs. For more information visit
www.thearc.org/siblingsupport/.


                   Summer Camps (Tri-State )
Father Drumgoole-Connelly Summer Day Camp at Mt. Loretto
Staten Island, NY
Contact: Julie Larsen
Phone (718) 317-2255
This camp is designed for children ages 5-12. There are four sessions each
lasting two weeks and a final session that lasts for one week. The sessions
are Monday-Friday. There are also 3-day and 2-day summerlong sessions.
The 3-day sessions meet on Mondays, Wednesdays and Fridays. The 2-day
                                                                                11
sessions meet on Tuesdays and Thursdays. All sessions are from 8:30am-
3:30pm. The camp features a wheelchair accessible pool, arts and crafts,
music, sports, drama, nature and outdoor play. The camp counselors receive
seizure first aid training and a registered nurse is on duty at all times.
The Epilepsy Foundation of New Jersey’s Camp Nova
Blairstown, NJ
Contact: Russell Berger
Phone (856) 858-5900
Email rberger@efnj.com
www.efnj.com/programs/campnova.shtml
Camp NOVA is a one-week overnight camp experience for individuals with
epilepsy and developmental disabilities. It is dedicated to the overall growth
and well being of children and young adults ages 8 to 25. The camp provides
swimming, boating, campfires, outdoor sports, beach volleyball, fishing, nature
walks, and more. There is an on-call neurologist and an on-site nurse. All
counselors receive training in first aid.
The Epilepsy Foundation of Connecticut’s Easter Seals Camp
Hebron, CT
Contact: Allison DuBois
Phone (800) 899-EPIL
www.epilepsyct.net
EFCT’s one-week overnight camp is for kids ages 6-18. The facility includes
a health center, auditorium, indoor-heated pool, greenhouse, Arts & Crafts
Center, a Nature Center, and a Challenge & Group Initiative course. All
counselors receive specialized training in seizure recognition and first aid
and a licensed nurse is in residence at all times. The camper to counselor
ratio is 3 to 1.
The Epilepsy Foundation Western/Central Pennsylvania’s Camp Frog
North Springfield, PA
Contact: Beth Riley
Phone (800) 361-5885
www.efwp.org/programs/programs 08.shtml
The Epilepsy Foundation Western/Central Pennsylvania sponsors a week-long,
overnight summer camping program called Camp Frog, located on the shores
of Lake Erie. Camp Frog allows kids with epilepsy/seizure disorders to be
integrated into a typical camping experience with hundreds of other children.
The overnight program is available to boys and girls with epilepsy/seizure
disorders from grades 4 to 12. Campers enjoy a host of activities, such as

12
archery, horseback riding, a climbing tower, sand volleyball, indoor-outdoor
hockey, soccer, miles of hiking trails, boating, fishing, swimming, sailing,
water-skiing, and canoeing. Waterfronts are supervised by certified lifeguards.
All camp staff members receive specialized training in seizure recognition and
first-aid training and a licensed pediatric neurologist and a registered nurse
are on-site. Scholarships and financial assistance are available to eligible
campers. Preference is given to residents of Western and Central PA.
Camp Loyaltown
Nassau County, NY
Contact: Paul Cullen
Phone (516) 293-1111
www.ahrc.org/camployaltown.0.html
Camp Loyaltown is a private, nonprofit, summer residential, respite camp which
cares for children as young as 4 years old through adults in their 80’s who
have developmental and other disabilities. Camper’s functional levels range
from mildly developmentally disabled through severely disabled. The camp is
situated on 235 wooded acres in the northern Catskill Mountains in Hunter, NY
offering campers a complete program of recreation. These programs include
swimming, boating, nature, arts & crafts, ceramics, fabric arts, dance, drama,
woodworking, athletics, music and cooking. Campers are grouped by age and
abilities and staff are assigned according to the needs of each individual.
The Epilepsy Foundation Rochester/Syracuse/Binghamton’s Camp
EAGR
Warsaw, NY
Contact: Mike Radell
Phone (585) 442-4430
Camp EAGR is a one-week overnight camp for kids with epilepsy ages 8 to
15, who are ambulatory and capable of managing their own personal needs.
EAGR is held at the YMCA of Greater Buffalo’s Camp Weona. Activities
include: swimming, canoeing, fishing, horseback riding, arts and crafts,
organized sports, hiking, epilepsy education and campfire sing-a-longs.
Camper to staff ratio is 3:1. Camp counselors are certified in seizure first
aid. There is an on-site neurologist, and two on-site nurses for distribution
of medication and basic first aid.




                                                                            13
     Travel Assistance for Families Seeking Medical
                       Treatment
American Airlines “Miles for Kids in Need”
Contact: Program Administration
Phone (817) 963-8158
Fax (817) 931-6890
www.americanairlines.com
Miles for Kids in Need provides air transportation for children needing medical
treatment. Must be a dependant child under 19 years of age, and the child’s
family must be recommended by a social worker at a medical institution, a
charitable organization, or a church.
The National Epilepsy Foundation J. Kiffin Penry Travel Assistance
Program
Phone (800) EFA-1000
www.efa.org
When people with seizures need specialized care, it may not be available in
the local area. Travel expenses for individuals and families may sometimes
be a barrier to such care. The Epilepsy Foundation offers a limited number
of travel assistance grants, up to $1,500 each (over a two-year period), for
people who must travel for specialized epilepsy care or testing.
Ronald McDonald House (New York City)
405 East 73rd Street
New York, NY 10021
Phone (212) 639-0100
Fax (212) 472-0376
www.rmhc.org
Ronald McDonald House gives priority to patients affected by cancer, but
sometimes makes housing available to other patients. Located on East 73rd
Street between First Avenue and York. Requires a $30 deposit and costs
approximately $20 a night.
The Finding A Cure for Epilepsy and Seizures (faces) Apartments
Skirball Residential Towers
564 First Avenue
New York, NY 10016
Phone (212) 871-0245
Email nyufaces@yahoo.com
The faces apartments give priority to children with epilepsy seeking medical
14
treatment at NYU Medical Center, but will provide housing to other patients if
space is available. Call at least two months in advance for best availability.
The apartments are free of charge.


                             Clinical Trials
For a listing of clinical trials for epilepsy, go to www.clinicaltrials.gov and
do a search on “epilepsy.”


                Special Education Information
Families and Advocates Partnership for Education (FAPE)
PACER Center
8161 Normandale Boulevard
Minneapolis, MN 55437
Phone (952) 838-9000
TTY (952) 838-0190
Fax (952) 838-0199
Email fape@fape.org
www.fape.org
FAPE aims to improve the educational outcomes for children with disabilities.
It links families, advocates, and self-advocates to communicate the new focus
of the Individuals with Disabilities Education Act (IDEA).
Learning Disabilities Online
www.ldonline.org
This learning disabilities website for parents and teachers has great links to
information about learning disabilities.
Negotiating the Special Education Maze: A Guide for Parents &
Teachers
By Winifred Anderson et al
This book is an introduction to special education law and the process of
getting services for your child.
Sensory Integration Network
www.sinetwork.org
A website for parents, teachers, and therapists on sensory integration problems.
Contains useful pamphlets that can be downloaded to explain Dysfunctional
Sensory Integration to teachers.

                                                                              15
Wrightslaw
www.wrightslaw.com
A comprehensive website dedicated to special education, including what rights
children and parents have, and how parents can advocate for their children.
Both IEPs and Section 504 accommodations are discussed. Any question or
concern a parent could have about getting needed services for their child is
covered. Most content is written specifically for the site by the Wrights, an
attorney and a psychologist, both experts in special education.


                            Special Schools
The Cooke Center for Learning and Development
475 Riverside Drive, Suite 730 (administrative offices)
New York, NY 10115
Executive Director: Michael Termini, Psy.D.
Phone (212) 280-4473
Fax (212) 280-4477
www.cookecenter.org
Email information@cookecenter.org
Started in 1987, the Cooke Center for Learning and Development offers
high quality, inclusive educational opportunities for children with a range
of developmental disabilities. Our students, ages 3-21, are educated through
our preschool, elementary and high school programs. Our full-time school
program services 120 students in 9 partner school sites. We also work with
several thousand more students through our School Wide Intervention Program.
They have a range of disabilities including Down Syndrome, Neurological
impairment, Fragile X Syndrome, epilepsy and physical disabilities. Cooke
prides itself in its professional development and training programs that now
reach out to educators across the country. Our staff is comfortable dealing with
students who have seizures and each year train personnel to deal with these
types of disorders and give emergency medical attention when needed.
Churchill School
301 East 29th Street
New York, NY 10016
Director of Admissions: Wendy Federico
Phone (212) 722-0610
Fax (212) 722-1387
www.churchillschool.com


16
The Demonstration Program at Montclair University
47 Clove Road
Upper Montclair, NJ 07043
Director: Antoinette Spiotta
Phone (973) 655-4357
Fax (973) 655-5155
Eagle Hill School
45 Glenville Road
Greenwich, CT 06831
Headmaster: Mark Griffin, Ph.D.
Director of Admissions: Rayma-Joan Griffin
Phone (203) 622-9240
Fax (203) 622-0914
www.eaglehillschool.org
Ferncliff Manor
1154 Saw Mill River Road
Yonkers, NY 10710
Director: Willaim Saich
Phone (914) 968-4854
Fax (914) 968-4857
www.ferncliffnamor.com
The Forum School
107 Wyckoff Avenue
Waldwick, NJ 07463
Director: Steven Krapes, Ed.D.
Phone (201) 444-5882
Fax (201) 444-4003
www.theforumschool.com
The Gateway School
236 Second Avenue
New York, NY 10003
Director: Robert B. Cunningham, M.A., Ed.M.
Phone (212) 777-5966
Fax (212) 777-5794
www.gatewayschool.org




                                                    17
The Gillen Brewer School
1190 Park Avenue
New York, NY 10128
Director: Donna Kennedy
Phone (212) 831-3667
Fax (212) 831-5254
Hawthorne Country Day School
5 Bradhurst Avenue
Hawthorne, NY 10532
Director: Christopher McDonough, PhD, BCBA
Phone (914) 592-8526
Fax (914) 592-3227
www.hawthornecountryday.org
The Midland School
94 Reading Road
PO Box 5026
North Branch, NJ 08876
Director: Phillip Gartlan
Phone (908) 722-8222
Fax (908) 772-6203
www.midlandschool.org
Mt. Pleasant Blythedale Children’s School
95 Bradhurst Avenue
Valhalla, NY 10595
Superintendent: Ellen Bergman, Ph.D.
Phone (914) 347-1800 ext. 201
Fax (914) 347-2307
www.blythedale.org
Parkside School
48 West 74th Street
New York, NY 10023
Administrative Director: Albina Miller
Phone (212) 721-8888
Fax (212) 721-1547
www.parksideschool.org




18
The Stephen Gaynor School
22 West 74th Street
New York, NY 10023
Director: Scott Gaynor, Ph.D.
Phone (212) 787-7070
Fax (212) 787-3312
www.sgaynor.com
The Smith School
131 West 86th Street
New York, NY 10024
Director: Karen Smith
Phone (212) 879-6354
Fax (212) 879-0962
www.SmithSchool.net
Westchester School for Special Children
45 Park Avenue
Yonkers, NY 10703
Director: Thomas Timmons, Ph.D.
Phone (914) 376-4300
Fax (914) 965-7059


                        Education Consultants
Patricia Sokolow
407 3rd Avenue
Waretown, NJ 08758
Phone (609) 698-5275


                   Finding an Epilepsy Specialist
New York City is home to several Comprehensive Epilepsy Centers, where you
will find some of the best epilepsy specialists in the world. You can locate top
epileptologists, neuropsychologists, and more through the American Epilepsy
Society and the National Association of Epilepsy Centers.




                                                                             19
American Epilepsy Society (AES)
638 Prospect Avenue
Hartford, CT 06105
Phone (860) 586-7505
www.aesnet.org
The AES web site features a searchable member directory where you can find
epilepsy specialists near you.
National Association of Epilepsy Centers (NAEC)
5775 Wayzata Boulevard, Suite 200
Minneapolis, MN 55416
(888) 525-6232 or (952) 525-4526
www.naecepilepsy.org
The NAEC is a non-profit (501 c 6-trade association) whose members include
more than 50 specialized epilepsy centers.


      Prescription Drug Patient Assistance Programs
For an excellent chart on pharmaceutical companies that have Prescription
Assistance Programs for epilepsy medications, please see Epilepsy: Patient
and Family Guide, 2nd edition, pages 135-138, by Orrin Devinsky, MD, F.A.
Davis Company, 2002. Proceeds from the book (which can be purchased
new or used at www.amazon.com) go to faces and the National Epilepsy
Foundation. You may also email NYUfaces@yahoo.com to receive a copy
of the chart via fax or mail.
Pharmaceutical Research and Manufacturers of America (PhRMA)
1100 15th Street, NW
Washington, DC 2005
PhRMA has information on prescription drug patient assistance programs
on their web site at www.helpingpatients.org.


     Therapists Recommended By Parents of Children
                     with Epilepsy
            Applied Behavioral Analysis Therapists
Programs for Little Learners, LLC
Executive Directors: Eileen Boothe, OT and Jennifer Strazzeri, OT
10 Wilsey Square, Suite 248
20
Ridgewood, NJ 07450
Phone (201) 251-3800
www.programsforlittlelearners.com
       and
266 White Plains Road, Suite 2A
Eastchester, NY 10709
Phone (914) 337-3026


                              Art Therapists
Lesley Achitoff, MPS
160 West End Avenue, Apt 3D
New York, NY 10023
Phone (212) 807-0546
Email nofony@RNC.com
Elizabeth Coss, MA, ATR-BC
15 Wyckoff Street, #17
Brooklyn, NY 11201
Phone (646) 522-7099
Email eqc9977@nyu.edu


                       Occupational Therapists
Pediatric Potentials of West Essex, LLC
Director: Laurie Kalb, OTR, BCP
Patricia Faller, OT
Grace Malone, OT
154 South Livingston Avenue, Suite 203-205
Livingston, NJ 07039
Phone (973) 535-5010
KidsCare Institute, Inc.
President: Colleen Kennedy, PT
3196 Kennedy Boulevard, 3rd floor
Union City, NJ 07087
Phone (201) 223-4949
The KidsCare Institute, Inc. for pediatric therapy has occupational and physical
therapists on staff and offers both school and clinic services. We have a newly
renovated clinic with suspended equipment, a parent observation area and a
vibrant, experienced staff who have devoted themselves to helping children
                                                                              21
with special needs. Greg Santucci also provides additional services in sensory
integration and therapeutic listening. For more information, contact:
        Director: Gregory Santucci, MS, OTR
        Pediatric Occupational Therapist, certified in Sensory Integration
        260 Prospect Avenue, Apt 662
        Hackensack, NJ 07601
        Phone (973) 563-4544
        Email Gregorysantucci@aol.com
Pediatric Occupational Therapy Services
Director: Chaye Lamm-Warburg, MA, OTR, BCP
1415 Queen Anne Road
Teaneck, NJ 07666
Phone (201) 837-9993
Email potschaye@aol.com
Jayme Lewin Rich, MPA, OTR/L
39 West 14th Street, Suite 307
New York, NY 10011
Phone (212) 414-2777
Email jaymerich.ot@earthlink.net
Lori Rothman, OTR
144 West 86th Street, #1B
New York, NY 10024
Phone (212) 595-7782
Email LRoth123@aol.com
Sara Schlussel, OTR
100 Lybecker Street
Englewood, NJ 07631
Phone (201) 569-0767
Email Mdotlevana@aol.com


                          Physical Therapists
Susan Guzzardo, PT, DPT
68-16 Eliot Avenue
Middle Village, NY 11379
Phone (212) 463-0400 x 647
Email Sugu@earthlink.com


22
Cindy Rosenbloom, PT
6 Myrtle Avenue
Demarest, NJ 07627
Phone (201) 784-0842
Hospital for Joint Diseases
Jennifer Tisco
301 East 17th Street, 4th Floor
New York, NY 10003
Phone (212) 598-6248
Helene Widman, PT
Phone (917) 992-4065
Email KidPT64@aol.com


                           Speech Therapists
Carmela Maio, MS, CCC-SLP, TSHH
Speech and Language Pathologist
95-11 101 Avenue
South Ozone Park, NY 11416
Phone (718) 641-6723
Pam Davis
Speech and Language Pathologist
1060 5th Avenue
New York, NY 10128
Phone (212) 831-4344
Email NUYKS@aol.com
Rachel Fisch-Kaplan, MS, CCC-SLP
New York Office:
107 West 82nd Street, Suite 103
New York, NY 10024
Phone (212) 712-2014
Email Zoulicat2@aol.com
New Jersey Office:
48 Maple Street
Summit, NJ 07901
Phone (973) 420-6774


                                               23
TIKES (Therapeutic Intervention for Kids and Educational Support)
Barbara Goldfarb-Portnoff, MA, CCC-SLP
Speech and Language Pathologist
206 Millburn Avenue, Suite 11A
Millburn, NJ 07041
Phone (973) 376-5888
Email Tikes01@aol.com
City Sounds of New York
Amy Grillo, MA, CCC-SLP, CER.AVP
134 West 26th Street, Suite 606
New York, NY 10001
Phone (212) 604-9360
Email CitySoundsAG@verizon.net
Pediatric Associates for Language and Speech
Debra K. Hagen, MA, CCC
333 West 57th Street
New York, NY 10019
Phone (212) 245-2455
Email PALS333@aol.com
Jeremie Hafitz, MPHI, CCC
27 Wildwood Terrace
Glen Ridge, NJ 07028
Phone (973) 743-6032
Phyliss Fabricant, MA, CCC-SLP
80 East End Avenue
New York, NY 10028
Phone (212) 628-4708
Sperling-Ratiner Speech Pathology Associates
Sharon Ratiner, MA, CCC-SP
351 Main Street
Metuchen, NJ 08840
Email SRatiner@aol.com
Patricia Walsh-Kay, MED, SLP
Speech and Language Pathologist
935 Park Avenue, Suite 1D
New York, NY 10028
Phone (212) 472-1910
24
                          Other Resources
                           Daycare Centers
A Brighter Today (California Area)
www.abrightertoday.org
A Brighter Today is a non-profit day care center with two programs: an infant
and toddler program (for ages 1 month to 23 months), and a pre-school
program (for ages 2 to 5 years). The center employs a licensed vocational
nurse, staffing for non-ambulatory children who weigh more than 25 pounds,
an infant pre-school teacher and a part-time nutritionist. The teachers on
staff have masters degrees and experience with children affected by epilepsy
and cerebral palsy.
Special Needs Activity Center for Kids (SNACK)
At “Go Fish”
220 East 86th Street, LL
New York, NY 10028
Phone (212) 439-9996
Fax (212) 439-9995
www.snacknyc.com
SNACK provides a supportive and non-competitive program that has been
designed specifically for special needs children from infants to age 12. SNACK
is the brainchild of a mother of a boy with developmental disabilities. SNACK
includes music and art, group/play socialization, behavior management, and
having lots of fun!


                                 Dentists
Michael King, DDS
30 East 40th Street
New York, NY 10016
Phone (212) 986-2039
Rainbow Kids Dental
Sungki Lee, DDS
3900 Park Avenue
Edison, NJ 08820
Phone (732) 452-0100


                                                                           25
The Matheny Center of Medicine and Dentistry
PO Box 339, Main Street
Peapack, NJ 07977
Phone (908) 234-0011 x 771
www.matheny.org
The Matheny Center is a “one-of-a-kind facility for children and adults with
disabilities.”


                            Disability Resources
National Information Center for Children and Youth with Disabilities
(NICHCY)
PO Box 1492
Washington, DC 20013
Phone (800) 695-0285
www.nichcy.org
Federal government information agency.
The Interdisciplinary Council on Developmental and Learning
Disorders, “Resource Guide for Parents by Parents”
Phone (301) 656-2667
www.icdl.com
Comprehensive resource guide on therapies, biomedical interventions, testing,
educational services, legal and insurance information.

             Catalogues for Special Needs Equipment
SportTime Catalogues
Phone (800) 850-8603
www.abilitations.com
Abilitations is a catalog that provides movement activity products, equipment and
sensory products designed specifically for the changing needs of children.
Integrations is a catalog dedicated to children who learn and process information
differently. This catalogue is a valuable resource for teachers of different learners,
speech pathologists, special educators, occupational therapists, and parents.
Sportime is an innovative physical education catalogue and resource guide
with over 400 pages of products for programs K through adult.
Flaghouse Special Populations Catalogue
Phone (800) 793-7900
www.flaghouse.com
Software, assistive devices, strollers, mobility aids, and more.
26
                           Financial Planning
Disabled and Alone/Life Services for the Handicapped, Inc.
352 Park Avenue South, 11th Floor
New York, NY 10010
Contact: Roslyn Brilliant, Executive Director
Phone (800) 995-0066 and (212) 532-6740
Email info@disabledandalone.org
www.disabledandalone.org
Life Services helps families do sensible planning for and with their disabled
sons or daughters, preparing for when they will no longer be able to provide
care (due to incapacity or death); provides advocacy and oversight after the
death of the parents, according to their written instructions and the special
needs of the person; and advises families, attorneys and financial planners
about “life planning” for a person with a disability. Life Services gives
parents an answer to the question, “Who will look after our child when we
are gone?”
UJA-Federation of New York
Director: Morton Asch
130 East 59th Street
New York, NY 10022
Phone (212) 836-1339
Fax (212) 836-1172
www.ujafed.NY.org
The UJA-Federation Community Trust for disabled adults is designed to
assist families in providing for the future needs of a physically, mentally, or
developmentally disabled family member. It is a third party master trust in which
a family member or friend sets up an account using his or her own funds. By
opening a trust account, a concerned party can provide for both financial and
advocacy needs of the disabled individual for the individual’s lifetime.


                      Make-A-Wish Foundation
New York (516) 944-6212
New Jersey (908) 964-5055
Connecticut (203) 261-9044
www.wish.org
The Make-A-Wish Foundation is the largest wish-granting charity in the
world. Their mission is to, “Grant the wishes of children with life-threatening
                                                                               27
illnesses and to enrich the human experience with hope, strength and joy”.
Make-A-Wish grants the wishes of children that are under the age of 18.
They accept referrals, which are kept strictly confidential. Children referred
to the foundation are determined to be eligible by their physicians. To refer
a child, please contact your local Make-A-Wish chapter.


                  Medical Identification Bracelets
Medic Alert
Phone (888) 633-4298
www.medicalert.org
Medic Alert will notify family members of an emergency, and hospitals can
call a toll free number to access medical information, including current
medications. The Medic Alert service costs $35 for the first year and $20
thereafter. A stainless steel bracelet is included in the first year’s dues, and
fancier bracelets can be purchased with prices ranging from $15 to $700.
About Me Jewelry
www.ebiz.netopia.com/aboutme/door/
Phone (877) 639-1004
Unique handmade beaded medical alert jewelry that children will want
to wear, custom made by a mother of a child with diabetes. As your child
grows, About Me Jewelry will resize your child’s bracelet for a nominal fee.
Prices range from $38 to $83, and engraving costs $6 to $12, depending on
the number of lines.


                  Miscellaneous Tips from Parents
“My son was on liquid phenobarbital and couldn’t stand the taste. The
pharmacist suggested a bubblegum flavor because it was the best flavor
at masking the yucky taste. Some parents don’t realize that many liquid
medications can be flavored.”
“VO5 Hot Oil treatment is great at getting the final bits of EEG glue out of
my daughter’s hair.”
“My son was throwing up and couldn’t eat. His medication level dropped
quickly and he had two grand-mal seizures in a row. It taught us to keep extra
medication in chewable tablet form and rectal Valium gel in our house so we
can try to avoid this problem in the future. Ask your doctor about special
safety precautions you can take that will help you avoid emergencies.”
28
“You may wish to consult the “Epilepsy Education, Management and Prevention
Activities Database (EEPAD),” which is produced by the National Center for
Disease Control and Prevention. The database contains information about
the application of effective epilepsy early detection and control, program
activities, education and prevention efforts. The EEPAD provides bibliographic
citations and abstracts for journal articles, books/book chapters, papers,
video recordings, and more, and their website is www.cdc.gov/cdp.”
“MedlinePlus is a goldmine of good health information from the National
Library of Medicine. MedlinePlus has information from the National Institutes
of Health, lists of hospitals and physicians, a medical encyclopedia and a
medical dictionary, health information in Spanish, information on prescription
and nonprescription medications, and links to clinical trials. There is no
advertising on the site, and MedlinePlus does not endorse any company or
product. Their websites are www.nlm.nih.gov/medlineplus/medlineplus.html
and www.medlineplus.gov.”


                        Nursing Organizations
National Association of School Nurses
www.nasn.org
The organization of school nurses in the US.
New York State Association of School Nurses
www.nysasn.org
The organization for school nurses in New York. Contains links to government
health initiatives, including National Epilepsy Month.


                        Protective Head Gear
Plum Enterprises
500 Freedom View Lane
PO Box 85
Valley Forge, PA 19481
Phone (800) 321-PLUM or (610) 783-7377
Fax (610) 783-7577
www.plument.com
Plum Enterprises makes protective headgear that is lightweight, shock
absorbent, colorful and comfortable. “Protectacap” helmets cost between
$132 and $229, depending on size. A firmer “Protectacap Plus” model is
also available, and prices range from $164 to $287.
                                                                            29
               Psychologists and Neuropsychologists
Many wonderful psychologists and neuropsychologists who specialize in
epilepsy can be found at your local Comprehensive Epilepsy Center (CEC).
For a listing of local CECs, call your local Epilepsy Foundation, or contact
the National Association of Epilepsy Centers, listed on page 20.
Gabriela Hohn, Ph.D.
Psychological Assessments & Solutions, P.C.
153 Waverly Place, 2nd Floor Suite
New York, NY 10014
Phone (212) 691-0291
Fax (917) 606-1022
Email geh6@columbia.edu
Licensed Clinical Psychologist and Neuropsychologist specializing in working with
children and adolescents. Areas of specialty include seizure disorders and epilepsy,
ADHD, learning disabilities, behavioral problems and stress reactions.


                              Psychotherapists
Sandra Greenbaum, ACSW
27 West 72nd Street, Suite 319
New York, NY 10023
Phone (212) 362-3475


                             Seizure Alert Dogs
Canine Partners for Life
PO Box 170
Cochranville, PA 19330-0170
Phone (610) 869-4902
Fax (610) 869-9785
Email info@k94life.org
www.k94life.org
The Delta Society
875 124th Avenue NE, Suite 101
Bellevue, WA 98005
Phone (425) 226-7357
Email info@deltasociety.org
www.deltasociety.org/
30
Paws With A Cause
4646 South Division
Wayland, MI 49348
Phone (800) 253-7297
www.pawswithacause.org


      Sign Language for Babies, Toddlers, and Children
Baby Fingers
Founding Director: Lora Heller, MS, MT-BC
Phone (212) 874-5978
Email info@mybabyfingers.com
www.mybabyfingers.com
Baby Fingers classes help to build a stronger communication bond between
parent and baby. Classes are open to children who are hearing, hard-of-
hearing, non-verbal, and deaf, as well as to parents whose children have a
variety of special needs.


                        The Son-Rise Program
2080 South Undermountain Road
Sheffield, MA 01257
Phone (413) 229-2100 or (877) SONRISE (766-7473)
Fax (413) 229-3202
www.son-rise.org
The Son-Rise Program is a nonprofit, federally tax-exempt, charitable
organization that believes that parents are their child’s best resource. Our
educational program is designed not only to work with children, but parents
as well. We teach parents concrete educational and attitudinal tools and
techniques to help them be the most effective teachers and trainers that their
children can have, enabling their children to dramatically improve in all areas
of learning, development, communication and skill acquisition. The teaching
staff of The Autism Treatment Center of America™ combines over 100 years
experience of working with children using The Son-Rise Program. We have
worked with more than 22,000 parents and professionals from around the
world — delivering proven results for over 25 years.




                                                                             31
     Notes




32
      Recommend Resources for the 2006 Edition

Parent Name:

Name:

Titles (O.T., PhD, etc.):

Address:

City, State:                               Zip:

Phone:                            Fax:

Email:

Website:



Name:

Titles (O.T., PhD, etc.):

Address:

City, State:                               Zip:

Phone:                            Fax:

Email:

Website:
Please send to:    NYU-faces
                   724 Second Avenue
                   New York, NY 10016
                   Fax: 212.871.1823
                   Email: NYUfaces@yahoo.com
Notes
         printed on recycled paper




 724 second avenue • new york, ny 10016
212.871.0245 (phone) • 212.871.1823 (fax)
         NYUfaces@yahoo.com
           www.nyufaces.org

				
DOCUMENT INFO